Sarah, thanks for starting this thread - for me it has been VERY helpful. I wasn’t sure of which was the ‘right’ thread for talking about this, but I have been able to find support here for my own experience with ‘the double whammy’ and hope my experience has given others some extra insight/useful info.
Jeannie51, I will PM you when I hear back from the hospital - I have written formal complaint letter to post on Monday.
Jen
Sarah, thank you for starting this thread. I was diagnosed in Feb this year with both primary and secondary cancer (bone mets) and have been reading threads on this site since then then but find our situation unusual and haven’t felt comfortable posting. The bone met caused my first symptoms, lower back pain which resulted in severe muscle spasms. I had immediate radiotherapy to my back followed by chemo (taxotere) plus herceptin. Also on zometa. Oncologist very pleased with response with last scan showing met now healing and shrinkage of breast lump. Have just been told that surgeon is keen to operate to remove breast tumour and armpit lymph nodes which I am pleased about. It would be good to continue to share our experiences on this thread. Abbie
Hi Lemongrove, thanks for your response. I’m not criticising the legal stuff but as I’m just diagnosed I don’t know what much of it means so get lost in all the jargon. I have managed to get a couple of contacts through this though and wish you well with all your battles.
Hi mrsblue. Sorry haven’t posted seem to be getting mixed up with the different threads I have been on (blame my chemo brain). When I was signed up for the trials it was my surgeon that put me forward to my clinical trials onc. Boths consultants were very positive at the time and my onc even used the word cure. So at the time I had no reason to believe there was any spread. However as time has gone on I do wonder if they surgeon used his many years of experience to manuover me in the right direction. Without going on the trials I would probably not of been scanned until after chemo which by that time would of been the wrong treatment. Also the Pertuzumab that I have with Herceptin and doxotaxal was the drug I would of trialed as a primary dx so I already know alot about it. So part of me if grateful that if this is the case he found a way around the system and things were found so early to give me a fighting chance. If not then I still benefit because they found things early. They say they want to keep a close eye on me and they are very excited about the benifits of the Pertuzumab. So that is where I am , not sure how I got here but here I am, and if a wise surgeon tried to help me then I am grateful. If you have any questions please post me or message me and I hope I have answered your question without going on to much. Take care. Angela xxx
Hi Abbie
We are on the same timeline . . After my lumpectomy an aixill clearance. I am exegeva shots and letrozole. I m still. In shock after receiving the Double whammy
Whoops pressed the wrong button lol.
i was going to say that the things are a little better now not sure why but I am coping. That is unil I meet up with supposely well meaning people asking me vey personnel questions. I am trying to stay private at the moment. That’s why chatting on these boards really helps.
thanks Sarah for starting us off on this discussion
Mara
Hi Mara, I know exactly what you mean about keeping things private, only my husband & 3 close family know of my secondary bone met diagnosis which is what I wanted when I was diagnosed in Feb. Because I have now finished chemo, am in no pain from my bone met and look really well (when I have my makeup and wig on!) I have to cope with comments about how well I am doing, and questions about my treatment plan. I know I will have to tell people the full story at some point but at the moment my treatment is going well and once I have my surgery next month and radiotherapy, I am planning on returning to work. I am on herceptin but will also be starting tamoxifen soon. Have you had chemo as well ? Abbie
Hi Abbie,
I’ve had a lumpectomy now (following chemo), but without lymph node clearance, as my surgeon didn’t see a benefit for me. So it’s herceptin + tamoxifen ongoing for me now too, with ongoing CT scans to keep any eye should any new tumours pop up. I find this position very confusing to be in - I have secondary cancer but potentially have no remaining tumours for now…
Sarah
Some of you have mentioned wanting to keep your diagnosis private… I don’t want to add to anyone’s problems but (if I understand correctly) every part of this forum (except PMs) is open for anyone to read, whether they are logged in or not.
BCC has not given us, who have secondaries, a private section where we can discuss our concerns, hopes, anguish etc. without alarming those who “only” have primary bc.
Someone please tell me that there is a private section for those of us with secondaries only, and that because of my chemo brain I have forgotten about it or am unable to find it…
I had double whammy practically straight away. Found lobular cancer from routine mammogram which had spread to my lymph nodes and went in for R Mx with temporary skin saver implant and L reduction because I was going to have DIEP reconstruction once chemo etc finished. I also had a lesion under my R breast which they told me was a skin cancer and they would get rid of it at the same time.
When I returned for my post op results they told me that the analyses of all the tissue had shown lobular BC also in the L breast (despite having MRI which showed L breast clear ) and some cells in the lesion also had breast cancer…so it had spread to surrounding skin.
Had CT scan which showed mets in upper spine and pelvis…and also some infiltration into peritoneal area.
I was in shock, never had a lump, thickening or anything. They then said that I should have a a reconstruction with an implant, but I didn’t want that. They said they couldn’t use my own tissue from my abdomen because it had been compromised. I wanted bilateral MX at this stage but the surgeon wasn’t happy about cutting into area which may have cancer, he was concerned that skin cancer might erupt.
i sent onto LETROZOLE and after 3 months my tumour markers had reduced ‘dramatically’ they reconsidered and I have had a bilateral Mx about 10 weeks ago. No reconstruction.
Anyway after another 3 months my tumour markers were down again and so I then had a CT scan…about 6 months after the first one. They have told me that there has been no further spread, the bone mets are either smaller or the same and that the peritoneal infiltration has -“almost completely resolved”-
the double whammy was devastating at the time but hopefully it is not the early death sentence that I was fearing at the time.
Hi Abbie and all you great ladies
I was also diagnoised in February. A heck of a shock.
I have not had chemo yet, I feel that it is to come one day in the future the far future I hope. After my lumpectomy and aixill they found during scan that I had hot spots in the bones hence the double whammy. I have not had anyn biopsies on the hot spots. I am on letrozole and exegeva
I just feel the less people know the more normal my life can be for now. A couple of good friends plus hubby know and they are such wonderful support . Chatting on here really helps to there is somuch help and comfort to be found amongst the ladies here.
Thanks for the warning Mrs Blue about privacy.
Take care everyone
Mara
<address>Hi Sarah. Just caught your post. I can understand what you mean about the confusion. I had a R breast mx which took the tumour away but then was quickly dx with secondary in the liver. I am on chemo at the moment( 4 more to go). If the chemo does its job and sorts the liver out does that mean I no longer have cancer in me. If it does its job I will be on Pertuzumab and Herceptin (as long as they work) for ever and scans. Or does this mean my body will always produce cancer cells. All I know is that as long as the drugs are working I will continue to take them. Hope your feeling well. Angela</address>
Thanks for starting this thread. Just over a year ago I had my double whammy. I walked into clinic expecting one thing and came out with quite another. Nobody can imagine the shock. You really do need a lot of time to get your head around it all. I had a large primary (IDC) in the left breast (originally misdiagnosed by my GP) and mets in liver and bones. I have multiple liver mets, I don’t think they were ever counted and some are large 25mm+. When I asked the prognosis was ‘more than weeks’ so I am (gratefully) surprised to still be here especially as this is not my only cancer diagnosis, I also have a rare and incurable blood cancer to complicate things.
I started immediately on 6 cycles of Taxotere with Herceptin. That finished in September and scans showed a moderate response. Since then I have continued on Herceptin and Zometa and remained fairly well. Latest scans showed the liver mets have continued to improve but there has been progression in the breast so I have just started radiotherapy to try to control that. My oncologist assures me there are plenty more treatment options and that he will treat this as a chronic disease. It is a roller coaster of a ride but it is good to find you are not alone and there are some wonderfully knowledgeable and supportive ladies here who will help you along.
Elliedog (Angela) - I hope this link will be useful, to explain how chemotherapy can kill off most/all cancer cells, how any left die off, and others are destroyed by the immune system.
cancerresearchuk.org/cancer-help/about-cancer/what-is-cancer/grow/cancers-sometimes-come-back
Jen.
Hi Jen. Thanks for the link it has helped to give a better understanding of my treatment and the part my immune system plays in the process. I have been doing various things before I started chemo and while on chemo to help boast my immune system and so far so good especicially my last treatment I have felt quite well so I hope I can continue this way. Thanks again for the link. Angela
It’s a useful link, jenanne, thank you. mrsblue, you’re right, we’re all out in the open, posting on this site.
Sarah
I was dx with double wammy in may 2009.I had had pain in my armpit for years but had had clear mammos so told nothing to worry about .I had excruciating back pain starting Feb 2009 and spent a fortune on physio,which was not really giving me any relief so decided to go to gp.I mentioned to him about the pain in my armpit getting worse and a slight sweeling as well as the back pain.He referred me to breast clinic and I was totally floored.I had a mammo and an ultrasound but nothing really showed up so they did a biopsy…and then a agonising weeks wait for the results. When cancer was confirmed I was sent for bone and ct scan…seems I had exstensive bone mets in spine,ribs,pelvis and femur, a local occurence in the lymph nodes BUT NO PRIMARY.They know it was breast cancer because of the hormone tests and they think it was a tumour so small to be undetectable on scans. I was totally distraut at the time but over the last 4 years have come to terms with the dx and manage to live a “normal life” around treatments and hospital appointments.
L xx
Dear All, advice/ideas needed and welcomed!
I had a 'phone call today from the director of the cancer centre regarding my apparent diagnosis with bone mets - which turn out to be very probably not mets. I thought I’d best post on this thread as I’ve discussed it here before and had good advice.
The director proposed a meeting soon to go through my concerns - with herself, my oncologist, a radiologist and the professor of BC at the centre.
She also said my surgeon could be present, but I said no - only because past feelings cropped up! After my m/x I asked the surgeon why my onc. left it so long to refer me for the m/x and he said words to the effect of ‘well, he’s not to blame really, he’s done his best’.
What I’m trying to say is that the thought of both the onc. and the surgeon being there made me feel anxious, because I imagined them sticking up for each other and coming out with things like ‘we did the right thing’ and questions not being thoroughly addressed.
I am glad this professor will be there as he hasn’t been involved with my treatment (so a kind of 2nd opinion?). Also glad of chance to ask the radiologist about what’s gone on re. d/g of bone mets and to be able to actually see/have explained my scans, x-rays.
I felt vulnerable again as soon as the director rang me about this meeting - ‘big cheeses’ and me! I will be taking a community health council advocate with me, but want to make sure this meeting will clarify everything.
Jen
The advocate from the community health council (CHC) - in England it is PALS - contacted me today and thinks, like me,that the hospital feels an investigation is warranted as they will have the professor/medical director there. I need to go through my list of concerns regarding probable bone mets misdiagnosis, so that everything is clear.
Most of all I would like my hospital to look at the whole question of whether surgery should be offered to women with small or isolated bone mets and, as in my case, when there’s uncertainty over bone mets d/g. I have read other posts on here from ladies who were given surgery. Because I didn’t have an early m/x, and the breast tumour came back, the cancer mutated to HER2+.
Jen.
Jenanne you raise a very good point about aggressive treatment of isolated bone mets - or any other mets for that matter. I had to fight a little to get this - but am very glad I did as I’m still here 4 years on doing really well. Those with minimal mets are classified as having oligometastases, and there is research that shows if treated aggressively the outcome is significantly better than the standard NHS wait and see approach. Interestingly the MD Andersen Centre in Texas, which has the best cancer survival rates in the world, takes this more aggressive approach - they also promote an integrated approach including diet and lifestyle issues - they are light years ahead of us.